Sense of coherence in adults with congenital heart disease in 15 countries: Patient characteristics, cultural dimensions and quality of life

Author:

Moons Philip1234,Apers Silke1,Kovacs Adrienne H56,Thomet Corina7,Budts Werner89,Enomoto Junko10,Sluman Maayke A1112,Wang Jou-Kou13,Jackson Jamie L14,Khairy Paul15,Cook Stephen C16,Chidambarathanu Shanthi17,Alday Luis18,Oechslin Erwin5,Eriksen Katrine19,Dellborg Mikael32021,Berghammer Malin2223,Johansson Bengt24,Mackie Andrew S25,Menahem Samuel26,Caruana Maryanne27,Veldtman Gruschen28,Soufi Alexandra29,Fernandes Susan M30,White Kamila31,Callus Edward3233,Kutty Shelby3435,Luyckx Koen3637,

Affiliation:

1. KU Leuven Department of Public Health and Primary Care, KU Leuven, Belgium

2. Institute of Health and Care Sciences, University of Gothenburg, Sweden

3. Centre for Person-Centred Care (GPCC), University of Gothenburg, Sweden

4. Department of Paediatrics and Child Health, University of Cape Town, South Africa

5. Toronto Congenital Cardiac Center for Adults, University Health Network, University of Toronto, Canada

6. Knight Cardiovascular Institute, Oregon Health & Science University, USA

7. Center for Congenital Heart Disease, Department of Cardiology, Inselspital – Bern University Hospital, University of Bern, Switzerland

8. Division of Congenital and Structural Cardiology, University Hospitals Leuven, Belgium

9. KU Leuven Department of Cardiovascular Sciences, KU Leuven, Belgium

10. Department of Education, Toyo University, Japan

11. Coronel Institute of Occupational Health, Amsterdam UMC, University of Amsterdam, the Netherlands

12. Department of Cardiology, Jeroen Bosch Hospital, the Netherlands

13. Department of Pediatrics, National Taiwan University Hospital, Taiwan

14. Center for Biobehavioral Health, Nationwide Children’s Hospital, USA

15. Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Canada

16. Adult Congenital Heart Disease Center, Helen DeVos Children’s Hospital, USA

17. Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), India

18. Division of Cardiology, Hospital de Niños, Argentina

19. Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Norway

20. Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Sweden

21. Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden

22. Department of Health Sciences, University West, Sweden

23. Department of Paediatrics, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Sweden

24. Department of Public Health and Clinical Medicine, Umeå University, Sweden

25. Division of Cardiology, Stollery Children’s Hospital, University of Alberta, Canada

26. Monash Heart, Monash Medical Centre, Monash University, Australia

27. Department of Cardiology, Mater Dei Hospital, Malta

28. Adult Congenital Heart Disease Center, Cincinnati Children’s Hospital Medical Center, USA

29. Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, France

30. Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, USA

31. Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, USA

32. Clinical Psychology Service, IRCCS Policlinico San Donato, Italy

33. Department of Biomedical Sciences for Health, Università degli Studi di Milano, Italy

34. Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children’s Hospital and Medical Center, USA

35. Taussig Heart Center, Johns Hopkins School of Medicine, USA

36. KU Leuven School Psychology and Development in Context, KU Leuven, Belgium

37. UNIBS, University of the Free State, South Africa

Abstract

Abstract Background Previous studies have found that sense of coherence (SOC) is positively related to quality of life (QoL) in persons with chronic conditions. In congenital heart disease (CHD), the evidence is scant. Aims We investigated (i) intercountry variation in SOC in a large international sample of adults with CHD; (ii) the relationship between demographic and clinical characteristics and SOC; (iii) the relationship between cultural dimensions of countries and SOC; and (iv) variation in relative importance of SOC in explaining QoL across the countries. Methods APPROACH-IS was a cross-sectional, observational study, with 4028 patients from 15 countries enrolled. SOC was measured using the 13-item SOC scale (range 13–91) and QoL was assessed by a linear analog scale (range 0–100). Results The mean SOC score was 65.5±13.2. Large intercountry variation was observed with the strongest SOC in Switzerland (68.8±11.1) and the lowest SOC in Japan (59.9±14.5). A lower SOC was associated with a younger age; lower educational level; with job seeking, being unemployed or disabled; unmarried, divorced or widowed; from a worse functional class; and simple CHD. Power distance index and individualism vs collectivism were cultural dimensions significantly related to SOC. SOC was positively associated with QoL in all participating countries and in the total sample, with an explained variance ranging from 5.8% in Argentina to 30.4% in Japan. Conclusion In adults with CHD, SOC is positively associated with QoL. The implementation of SOC-enhancing interventions might improve QoL, but strategies would likely differ across countries given the substantial variation in explained variance.

Funder

Research Fund – KU Leuven

Swedish Heart-Lung Foundation

University of Gothenburg Centre for Person-centred Care

Cardiac Children’s Foundation

Publisher

Oxford University Press (OUP)

Subject

Advanced and Specialized Nursing,Medical–Surgical Nursing,Cardiology and Cardiovascular Medicine

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